advice please

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Ratatosk

Administrator
Staff member
DS was diagnosed shortly after he was born due to a bowel obstruction caused by ME, atresia... He was given enzymes when he was about 10 days old, which is when we were finally able to give him formula -- prior to that TPN and pedialyte while he was healing. HATED, pregestimil also didn't do well with applesauce and enzymes, so the NICU nurse called up to the CF floor for suggestions -- baby food bananas on a tongue depresser. And we switched to regular formula.

He was getting percussion and nebs while recovering from surgery, once the CF diagnosis came thru -- about 5 days after he was born they started CPT. Since he kept getting infections during his recovery, we were in the NICU for 4 weeks, so we had the RTs show us how to do CPT -- pretty much been beating him 3-4 times a day with nebs since he was two weeks old. DH was a little braver, I was a little nervous with the broviac (central line) and all the wires.
 
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tammykrumrey

Guest
I do think that maybe trying a different enzyme, like already suggested would be worthwhile. I would be worried that they are not concerned with the CF yet also.
As far as the 'beating of the chest' which we always called LovePats at our house, we were not told to start until my daughter was about 6 months old. She had no lung involvement, and still doesn't really. I am not sure why they didn't have me start when she was younger except for maybe because my older daughter was dx just 4 months earlier at 14 months, and we were still having some challenges in that department and maybe they didn't want to add too much on me?... Not really sure. And at the time, didn't ask, probably because I didn't have the support symstem of sites like this to learn from. Also, we had a different doctor then than what we have now. Who knows!
 
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tammykrumrey

Guest
I do think that maybe trying a different enzyme, like already suggested would be worthwhile. I would be worried that they are not concerned with the CF yet also.
As far as the 'beating of the chest' which we always called LovePats at our house, we were not told to start until my daughter was about 6 months old. She had no lung involvement, and still doesn't really. I am not sure why they didn't have me start when she was younger except for maybe because my older daughter was dx just 4 months earlier at 14 months, and we were still having some challenges in that department and maybe they didn't want to add too much on me?... Not really sure. And at the time, didn't ask, probably because I didn't have the support symstem of sites like this to learn from. Also, we had a different doctor then than what we have now. Who knows!
 
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tammykrumrey

Guest
I do think that maybe trying a different enzyme, like already suggested would be worthwhile. I would be worried that they are not concerned with the CF yet also.
As far as the 'beating of the chest' which we always called LovePats at our house, we were not told to start until my daughter was about 6 months old. She had no lung involvement, and still doesn't really. I am not sure why they didn't have me start when she was younger except for maybe because my older daughter was dx just 4 months earlier at 14 months, and we were still having some challenges in that department and maybe they didn't want to add too much on me?... Not really sure. And at the time, didn't ask, probably because I didn't have the support symstem of sites like this to learn from. Also, we had a different doctor then than what we have now. Who knows!
 
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scheesman

Guest
They only tried the enzymes and apple sauce one time and she through it up. We don't know if it was the sauce,enzymes, or her battling with her feedings. They are mostly focusing on her feeding, but we think she is past that now. She is up to 130cc per hour now. We were having to give her what she would take by mouth and put the rest in her g-tube. Over the past 2 days she has been taking it all. The cf center is 2 blocks from the hospital and we went down yesterday to talk to them and they said we had to have a docs order to talk to someone because she is still in the hospital. We are very busy with this stuff so when I get a chance I explain everything that Lily has been through. The hospital is 50 miles away and we go over everyday. My wife (Liz) has been over there sence Sunday. I do have some ?'s. What does CPT stand for? What are nebs? Thank you all, Shawn
 
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scheesman

Guest
They only tried the enzymes and apple sauce one time and she through it up. We don't know if it was the sauce,enzymes, or her battling with her feedings. They are mostly focusing on her feeding, but we think she is past that now. She is up to 130cc per hour now. We were having to give her what she would take by mouth and put the rest in her g-tube. Over the past 2 days she has been taking it all. The cf center is 2 blocks from the hospital and we went down yesterday to talk to them and they said we had to have a docs order to talk to someone because she is still in the hospital. We are very busy with this stuff so when I get a chance I explain everything that Lily has been through. The hospital is 50 miles away and we go over everyday. My wife (Liz) has been over there sence Sunday. I do have some ?'s. What does CPT stand for? What are nebs? Thank you all, Shawn
 
S

scheesman

Guest
They only tried the enzymes and apple sauce one time and she through it up. We don't know if it was the sauce,enzymes, or her battling with her feedings. They are mostly focusing on her feeding, but we think she is past that now. She is up to 130cc per hour now. We were having to give her what she would take by mouth and put the rest in her g-tube. Over the past 2 days she has been taking it all. The cf center is 2 blocks from the hospital and we went down yesterday to talk to them and they said we had to have a docs order to talk to someone because she is still in the hospital. We are very busy with this stuff so when I get a chance I explain everything that Lily has been through. The hospital is 50 miles away and we go over everyday. My wife (Liz) has been over there sence Sunday. I do have some ?'s. What does CPT stand for? What are nebs? Thank you all, Shawn
 
R

Ratatosk

Administrator
Staff member
CPT is chest physiotherapy -- beatings. Nebs are nebulizer treatments -- DS gets albuterol and atrovent (bronchiodialators) with his CPT treatments.

Is she getting any enzymes at all with her feedings? If not, the lackof weight gain could be from malabsorption. Plus she runs the risk of getting another obstruction. We had issues at the beginning -- ds picked up a couple infections in the NICU and threw up a few times, plus getting adjusted to feedings after going without for so long.

We were at a hospital with a CF center and when the diagnosis came thru, the neonatologist who was DS's primary doctor at the time asked if we wanted to speak with a CF doctor and arranged to have someone come speak to us. We switched to him as DS's primary doctor after that. Could you or your wife contact the CF center and make an appointment with a CF doctor there to discuss your concerns?

The hospital we were at was 250 miles from home. We were just in a holding pattern, waiting for DS to gain enough weight, get off IV antibiotics, that I looked into having him transferred to our local hospital. There were social workers at the CF center who looked into costs. Didn't need to do that 'cuz DS was released a week or so later, but there were individuals available to help us with those types of issues.
 
R

Ratatosk

Administrator
Staff member
CPT is chest physiotherapy -- beatings. Nebs are nebulizer treatments -- DS gets albuterol and atrovent (bronchiodialators) with his CPT treatments.

Is she getting any enzymes at all with her feedings? If not, the lackof weight gain could be from malabsorption. Plus she runs the risk of getting another obstruction. We had issues at the beginning -- ds picked up a couple infections in the NICU and threw up a few times, plus getting adjusted to feedings after going without for so long.

We were at a hospital with a CF center and when the diagnosis came thru, the neonatologist who was DS's primary doctor at the time asked if we wanted to speak with a CF doctor and arranged to have someone come speak to us. We switched to him as DS's primary doctor after that. Could you or your wife contact the CF center and make an appointment with a CF doctor there to discuss your concerns?

The hospital we were at was 250 miles from home. We were just in a holding pattern, waiting for DS to gain enough weight, get off IV antibiotics, that I looked into having him transferred to our local hospital. There were social workers at the CF center who looked into costs. Didn't need to do that 'cuz DS was released a week or so later, but there were individuals available to help us with those types of issues.
 
R

Ratatosk

Administrator
Staff member
CPT is chest physiotherapy -- beatings. Nebs are nebulizer treatments -- DS gets albuterol and atrovent (bronchiodialators) with his CPT treatments.

Is she getting any enzymes at all with her feedings? If not, the lackof weight gain could be from malabsorption. Plus she runs the risk of getting another obstruction. We had issues at the beginning -- ds picked up a couple infections in the NICU and threw up a few times, plus getting adjusted to feedings after going without for so long.

We were at a hospital with a CF center and when the diagnosis came thru, the neonatologist who was DS's primary doctor at the time asked if we wanted to speak with a CF doctor and arranged to have someone come speak to us. We switched to him as DS's primary doctor after that. Could you or your wife contact the CF center and make an appointment with a CF doctor there to discuss your concerns?

The hospital we were at was 250 miles from home. We were just in a holding pattern, waiting for DS to gain enough weight, get off IV antibiotics, that I looked into having him transferred to our local hospital. There were social workers at the CF center who looked into costs. Didn't need to do that 'cuz DS was released a week or so later, but there were individuals available to help us with those types of issues.
 
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scheesman

Guest
We first found out Liz was a carrier at 30 weeks. I got tested the next day and got results in 1.5 weeks. I was also a carrier. We figgered at that point there was no sence in the amneo ( I don't know how to spell it).

Lily was born on Nov. 15 @ 6lb-5oz with a big belly. She spit up her first 2 feedings. They took her to surgery the next morning, the docs said it went well. They got the blockage out. 11 days went bye and her belly got bigger and bigger. We finely said they had to do something to help her. She went back to surgery on Nov. 27 and they put in an ostomy bag. She had that till Feb. 1. Surgery that time went very good. Doc said it couldn't have went better.

And now we are at this stage. Through all of this she has been on TPN. She also had 2 central lines fail. Well thats the story, there are more details but my fingers hurt. If you have ?'s about them I will answer them. THANKS for being here
 
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scheesman

Guest
We first found out Liz was a carrier at 30 weeks. I got tested the next day and got results in 1.5 weeks. I was also a carrier. We figgered at that point there was no sence in the amneo ( I don't know how to spell it).

Lily was born on Nov. 15 @ 6lb-5oz with a big belly. She spit up her first 2 feedings. They took her to surgery the next morning, the docs said it went well. They got the blockage out. 11 days went bye and her belly got bigger and bigger. We finely said they had to do something to help her. She went back to surgery on Nov. 27 and they put in an ostomy bag. She had that till Feb. 1. Surgery that time went very good. Doc said it couldn't have went better.

And now we are at this stage. Through all of this she has been on TPN. She also had 2 central lines fail. Well thats the story, there are more details but my fingers hurt. If you have ?'s about them I will answer them. THANKS for being here
 
S

scheesman

Guest
We first found out Liz was a carrier at 30 weeks. I got tested the next day and got results in 1.5 weeks. I was also a carrier. We figgered at that point there was no sence in the amneo ( I don't know how to spell it).

Lily was born on Nov. 15 @ 6lb-5oz with a big belly. She spit up her first 2 feedings. They took her to surgery the next morning, the docs said it went well. They got the blockage out. 11 days went bye and her belly got bigger and bigger. We finely said they had to do something to help her. She went back to surgery on Nov. 27 and they put in an ostomy bag. She had that till Feb. 1. Surgery that time went very good. Doc said it couldn't have went better.

And now we are at this stage. Through all of this she has been on TPN. She also had 2 central lines fail. Well thats the story, there are more details but my fingers hurt. If you have ?'s about them I will answer them. THANKS for being here
 
S

scheesman

Guest
Just to let you all know, Lily should be coming home Tuesday. She will come home with a g-tube and a kagaroo pump.
 
S

scheesman

Guest
Just to let you all know, Lily should be coming home Tuesday. She will come home with a g-tube and a kagaroo pump.
 
S

scheesman

Guest
Just to let you all know, Lily should be coming home Tuesday. She will come home with a g-tube and a kagaroo pump.
 
D

dyza

New member
Hi Shawn,
Something that we found usefull to do was to keep a daily journal of meds, feed etc. etc. You will be overwhelmed with information, questions to ask doctors...write it all down, it will help you to keep on track. We kept a journal for over a year, until we were used to all the daily treatments, now its like second nature.
 
D

dyza

New member
Hi Shawn,
Something that we found usefull to do was to keep a daily journal of meds, feed etc. etc. You will be overwhelmed with information, questions to ask doctors...write it all down, it will help you to keep on track. We kept a journal for over a year, until we were used to all the daily treatments, now its like second nature.
 
D

dyza

New member
Hi Shawn,
Something that we found usefull to do was to keep a daily journal of meds, feed etc. etc. You will be overwhelmed with information, questions to ask doctors...write it all down, it will help you to keep on track. We kept a journal for over a year, until we were used to all the daily treatments, now its like second nature.
 
S

scheesman

Guest
Is there anything we should do to our home like air purifiers before Lily comes home? Do we have to get heavy duty air filters for the a/c unit? Stuff like that.
 
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